The Accidental Amazon

In three months, it will have been five years since I was diagnosed with breast cancer. I started this blog over four years ago, shortly after acute treatment was finished and I’d returned to work. At first, it was a way to sort out the aftermath and help me convince myself that I’d be okay. It was a way to wrestle the Monster down to a manageable size, to laugh at it, to provide a voice of skepticism and candor in the face of the Positivity Pollyannas whose tyranny did not reflect my reality.

As time went on, the blog became a lot more — a place to research and write about the collateral damage of cancer treatment, to comment on the massive pink merchandising and sexualization of breast cancer, to decipher hype about research findings, and to provide some practical and hopefully useful information for others coping with pain, misery, fatigue, depression and all the other myriad facets of ‘surviving’ cancer and its treatment. It also became a way to pay it forward, to give something back.

The best thing about it is that it became a conversation. It connected me to a remarkable and worldwide community of like-minded souls. That conversation has been hugely nourishing. I’ve made lifelong friends through the blogosphere and social media. I’ve learned a tremendous amount about the strength, love, intelligence and generosity of our online community, and that has helped me keep my sanity.

It also helped me redefine my focus at work. As I visit my homecare patients, the extensive research I’ve undertaken to write so many blog posts provided me with a lot more tools as I’ve provided physical therapy and case management to an increasing number of cancer patients. Four months after I started the blog, I participated in clinical training for oncology rehab. Since then, I’ve participated in a number of research projects as a subject, gone to advocacy seminars, and gained further professional certification for oncology rehab. All the while, I continued to grapple with fatigue, brain fog, daily pain, and even a close encounter with non-invasive colon cancer. Far and away, the most painful struggle has been to come to terms with how many friends have developed metastatic cancer, to mourn the deaths of so many friends from cancer, friends I’ve made through the blogosphere and through my life and work. The sum total of all of this has brought me to a crossroads that has taken me months to define and articulate. It’s still hard to put words to it, but something has changed. I’ve changed. And I need to shift the path I’m on to figure out what it means.

The path I need to choose now is likely to lead me away from blogging for a while. I don’t know for how long. It might be weeks. It might be months. It’s not for lack of subjects to write about or, strictly speaking, for lack of desire to write about them. It’s more that I need to nourish myself differently right now. There’s been nothing light-hearted about the journey I’ve been on. Even at the height of my snarkitude, which has been immensely fun, the burden of carting this cancer freight in my consciousness has been heavy. And growing heavier. I find myself needing to lighten the load for a while, or shift it somehow, so I do not find myself crushed by the weight of it.

Part of what has nourished me for so long by writing this blog has started to deplete me, not nourish me. It’s hard to admit that — it makes me feel like I’m giving up. But I remind myself that the blog is not the only vehicle by which I can pay it forward and help others. I do it at work every day. And for now, that has to be enough. The uber-awareness I’ve developed by writing here needs to be counterbalanced. I had no choice about accepting how much cancer took over my life since 2008. I’ve lost so much of myself since then that I feel almost unrecognizable when I examine what my everyday life has become. But now, it’s time to take back more of those parts of my life that have been on hold. For a long time, I was hard-pressed to do so. The good news is that now I finally feel capable of doing so. That is a sign of healing.

I know that my next doctor visit, my next scan, my next mammogram or lab test or colonoscopy could change things all over again and drop me right back in the ditch. We always live with that possibility. But for now, while I am lucky enough to occupy that magical place known as No Evidence of Disease, I’m going to endeavor, as much as I’m capable of, to live without looking over my shoulder.

In short, I need to remember how to play.

So, I’ve been re-acquainting myself with my sense of wonder. I’ve been trying to repair my social life. I’ve been reconnecting with my inner child, the child I described in my last post, who followed her passions and curiosity, and explored the world. So much of my life has been interior these past five years. Now, it’s time to get outside of myself again. I’m giving myself permission to remember who I am, a woman who is not just a cancer patient.

I want to write just for the sheer pleasure of it, not to make a point or an argument. Not to vent. I want to write about something besides cancer. I want to write more poetry, more stories that are not about grief. I want to make more art and dust off the sewing machine and reorganize my studio and plant flowers. I want to clean my closets, metaphorically and literally. I want to spend more time with the people I love and NOT talk about how I’m feeling in relation to cancer, but in relation to life itself. I want to set up my father’s old telescope and look at the stars. I want to have parties and cook extravagant meals and go for long drives and read books that aren’t about cancer and draw with crayons and colored pencils. I want to dream dreams again. I want to make plans that don’t involve fear and doctors.

I want to kick my way out of the cancer morass and become myself again. And when I do, I’ve no doubt I’ll be back here, better, clearer.

I want to go out and play. And I think that finally, at long last, I can. And that makes all the difference.

Euclid drawing a theorem construction.

When I was fourteen, I discovered a great affinity for plane geometry, developed largely by Euclid, the Father of Geometry, who gave birth to his theorems and axioms around 300 B.C. I was adjusting to the ravages of puberty at the time, and therefore struggling with my personal geometry. This included a growth spurt right before I entered the 9th grade, during which I grew in height by 5″ within four months, and after which I resembled nothing so much as a stick figure made of several pipe-cleaners. Abandoning any hope of looking voluptuous, I settled instead for my math teacher’s quiet approbation, and frankly enjoyed being one of the few members of our class who was fascinated by the constructions she drew on the blackboard, not unlike what Euclid himself seems to be doing in this painting.

A few years later, our class took an extensive aptitude test that included several categories of skill, like verbal and mechanical, along with other more arcane abilities. I ended up scoring 100 in a category called ‘spatial relations,’ which is one of those tests where you have to determine what a 2D figure would look like were it glued together to make a 3D figure. And vice versa. This is a skill that comes in handy for future architects, engineers and physical therapists (who may as well call ourselves biomechanical engineers), although at the time, I had little intention of pursuing any of those professions. The first two vocations were mentioned to me somewhat half-heartedly by our (male) high school guidance counselor, but the last one was never brought up at all. Had it been, I may have trundled down the road that led to my eventual career a decade or so earlier than I did. But this was all taking place around 1970, and the guidance counselor didn’t really know what to do with me. Girl architects and engineers were not exactly thick on the ground back then.

An Exploratory Childhood

I can’t really take any credit for my inherent aptitudes. I may as well admit now that my parents were both geniuses. They both had IQ’s well into the triple digits. My mother had the highest IQ in her class. My father was double-promoted twice, and graduated from high school at age fifteen. Not that it did either of them much good career-wise. They were both children in the Depression of 1929, and came from large, poor families, and thus college was far beyond their ken. My mother went to work for the Phone Company. My dad joined the Army during World War II and was trained in electronics. When he was honorably discharged, he also went to work for the Phone Company, where he eventually met my mom. The rest, as they say, is history.

Aside from the genetic inheritence, there were a lot of advantages to having frustrated geniuses as parents. For one thing, they were both rather eccentric, mostly in a good way. My mother sewed clothes and slipcovers, wrote extremely clever poetry, admired Emily Dickinson and Eleanor Roosevelt, and joined the Abigail Adams Historical Society, conveniently located down the street from us at Abigail Adams’ birthplace. My father filled our basement with the flotsam and jetsam of his many interests, most of them electronic or chemical in nature. The latter included a photographic darkroom. The former encompassed his considerable audiophilia and enough electronic thing-um-a-bobs to fill a small warehouse. When I was about ten, my father bought a telescope, subsequent to our Sunday excursions to the Hayden Planetarium at the Boston Museum of Science. Bless them both. They never did things by halves.

Following their passionate example, I learned that ‘play’ did not merely indicate a good game of kick ball. It meant that I was, for instance, allowed to learn to cook and bake at a young age, with only enough guidance not to harm myself or burn the house down. It meant I was allowed to take apart the spare sewing machine, my grandmother’s old Singer, and figure out how to put it back together so I could make doll clothes. It meant I could sing and bang away on the old spinet piano before supper, when I was learning to read music at school, and my mother did not holler at me to cease my infernal racket. It meant I could make a big mess, as long as I eventually tidied up after myself. It meant I could make mistakes. It meant I had a lot of fun and learned things I didn’t even know I was learning.

Drawing by Leonardo da Vinci

These and other activities did in fact lead inexorably to 9th grade plane geometry. When you are learning to bake from scratch, you have to follow recipes. If you muck up the fractions and measurements, you end up with burnt, inedible cookies. Then there was the Barbie Dream House I got for my ninth birthday. The house itself and its furniture were made of corrugated cardboard and ‘required some assembly.’ My parents left me to slog through this without assistance. Not only did I manage to fold and insert tab A into slot B over and over, I decided to unfold all the cardboard furniture, trace it on posterboard, draw my own designs, and redecorate. Very instructive, and much more interesting than pretending that Barbie was in a lather about what to wear on her next date with Ken.

Then my dad gave me a science kit for Christmas. Among other things, it included a rudimentary microscope (also with ‘some assembly required’) and a crystal growing kit. The chemicals included (chiefly potassium alum) resulted in some very pleasing clear and purple colored geometric shapes, dangling at the end of a string over the saturated solution at the bottom of a glass jar. My dad being my dad, I was allowed to try the same thing with one of his color photography developing chemicals, an interesting substance called potassium ferricyanide, which resulted in a beautiful, ruby-red shape called a rhombohedron, a kind of slanted cube. Somehow or other, I managed to turn all this into some kind of extra-credit science project for school, and got an A.

Perhaps the following Christmas, I got a make-your-own kaleidoscope, plus an origami kit. Wow!!! I highly recommend both, for adults and children. They both provided an almost painless way to be creative and learn a great deal about angles, shapes, spacial relations, and light refraction. Science, math AND art! What could be better? Meanwhile, having outgrown dolls by then, I decided to sew clothes for myself. It turned out to be fortunate that my Catholic grammar school education did not include ‘home economics,’ because I turned to a do-it-yourself book from the local library, and learned more, with a bit of guidance from my mother, mostly in the form of the odd box of pins and dressmaker’s chalk. It still mystifies me that so many women who sew, knit, embroider and engage in other myriad craft-making projects consider themselves hopeless at math or geometry, when their hobbies so obviously include the application of calculations, and the magical transformation of 2D materials into 3D results. Take heed, crafty sisters. You know a lot more than you think.

Woman Teaching Geometry

Calculating Women

Small wonder really, that I developed an affinity for plane geometry. During International Women’s Month, I find myself pondering how far we women have come, yet how far we have to go. Remarkably enough, when I was in the 9th grade back in 1968, girls were not ‘allowed’ to take mechanical drawing. This incomprehensible piece of sexism endured despite the fact that girls who demonstrated a passable math aptitude were certainly expected to take math and science classes in my college-prep Catholic high school. Not to mention the fact that mechanical drawing was taught by a nun. And that a few years later, I was, albeit reluctantly, encouraged to consider studying architecture or engineering, two fields that manifestly required one to learn mechanical drawing. At the end of the 9th grade, I discovered that my math teacher, my physical science teacher, and the mechanical drawing teacher, nuns all, apparently launched a protest about this archaic and sexist exclusion, using myself and a few other geeky girl classmates as examples of why it should be abolished. By the time I entered the 10th grade, 9th grade girls were at last able to study mechanical drawing. I missed out on the class, but I managed to go on to study biology, chemistry, physics, algebra and trigonometry, all taught by women. Nothing like striking a blow for feminism, and I didn’t even have to burn my bra.

Today, we still need more women in what is called STEM — Science, Technology, Engineering and Mathematics. Women and other minorities continue to be underrepresented in these fields, and make less money than their white, male counterparts. Today, as it happens, Ann Hoang has posted links to several articles about this, at the website STEMINIST.com. Even the White House has provided a special page about Women in STEM, with lots of news and fact sheets. Further helpful info can be found here: STEM Education for Girls. I could write several posts about the ramifications of the current political and economic climate, but suffice it to say that when women’s reproductive health continues to be under attack, when research into metastatic cancer is still woefully underfunded, and when access to affordable healthcare is still threatened by further cuts to so-called ‘entitlement’ programs, we need more women in science, technology, research, and medicine to get out there and kick some calculating butt.

If you want to raise children, and especially girls, who, like me, end up with a graduate degree in science, I think my parents set a fine example. They let me help them make, take apart, and fix stuff. I was bored sometimes, like when my dad used to make me help him tinker with the car. But as an adult, I learned how to use power tools and can even set up my computer without the aid of a thirteen-year-old.

Although I’m sure it was trying at times, my parents were not afraid to let me make a mess. They let me make my own mistakes and figure out where I’d gone wrong. They knew instinctively that exploration is the best kind of play. They read to me, they played games with me, they took me to the library, to concerts and plays, and to museums of every stripe. I didn’t always relish looking at Art with a capital A, but later, I discovered I’d developed an appreciation I didn’t know I had. They also let me make music and art. Research has shown that learning music enhances a child’s understanding of math. And art! I still have fond memories of spending hours with my Crayola 64-pack crayons and a stack of scrap paper. Nowadays, kids can make art and videos out of all kinds of media, including digital. When I was at first baffled by learning to use Adobe Illustrator, I was astonished to figure out that it operated by using vectors and angles. There’s a lot of math in art. And there’s a lot of creativity in science. Look at da Vinci! Perhaps most importantly, my parents knew how to facilitate, not dictate. They’d help me a little, then get out of my way.

It struck me as I was writing this that I should dedicate it to the memory of two of my favorite math geeks, Rachel Cheetham Moro and Susan Niebur.

So, rock on, girl geeks! And make your mark on the future.

One of the reasons I haven’t written as many posts as I’d like is that I spend a lot more time than I used to writing and typing stuff so I can get paid. Four years ago, I was all for it when the homecare agency I work for finally bought us clinicians some laptops and bought the whole agency some documentation software. It involved a massive outlay of money, effort, and training. And that was just the beginning. There were — and still are — the inevitable software bugs, crashes, server inadequacies, updates, errors, and just-plain-mystifying nonsense. There were — and still are — too many time-consuming emails, meetings, seminars, and phone calls needed to fix things. But still, I was psyched. At last, we were moving into the 21st century! At last, we could blast through our visit notes and spend more time actually helping our patients! Boy, was I wrong.

For me, there were further, unexpected ramifications. I had just returned to work, after acute cancer treatment was over, when all these changes began taking place. Within months of being back on the job, the long- and late-term side effects of cancer treatment forced me to cut back my hours, from full to part-time. First, I had to cut them in half. Eventually, I clawed my way through the murky side effects ditch back to working four days a week, instead of the five I used to do. However, thanks to our 21st century documentation, I still work five days a week. I just don’t get paid for it. Sometimes, when I’m tightening my belt yet again because it’s hard to pay my bills with one-fifth less income, I think about trying to return to full-time. But I know that if I did, I’d end up working 50 hours a week instead of 40, and I just can’t do that anymore. I’m also very well aware of being fortunate that, despite fatigue, pain, brain fog, financial stress, and the ever-present anxiety of cancer vigilance, I can do my job at all.

Ten Dollar Aspirins

This past week, Steven Brill wrote a piece for Time called Bitter Pill: Why Medical Bills Are Killing Us. It has been widely and justifiably shared on social media. The points Brill makes that have stirred perhaps the most outrage and discussion concern the “lopsided pricing and outsize profits” inherent in the system. If you examine an itemized bill for a hospital stay, that includes items like $29 for a few gauze pads that actually cost a nickel a pad, or $10,000 charges for one dose of a chemo drug that may cost the manufacturer $200, it’s hard not to feel like we’re all getting shamelessly gouged. Indeed, when you move into the realm of cancer care, you begin to understand the pressure cooker of spiralling costs to which both doctors and patients contribute. In her memoir, The Cost of Hope, journalist Amanda Bennett poignantly described how much it cost to treat, and ultimately fail to save, her husband from the ravages of kidney cancer. Over the seven years of his care, the motivation to do everything possible led to expensive duplication and redundancy of services. As she researched the details for her book, she found, in just one stunning example, that her husband had received a total of 76 CT scans. Bennet asked, “Were all of them useful and ordered for a good reason? I’m positive of that. Were all of them necessary? I’m just as sure not.”

As someone who has a foot in both camps, the patient camp and the clinician camp, what most interested me about Brill’s article was the first part of it, in which he discusses how much it costs to administer healthcare. And why. Medicare, for example, has to be more accountable for every dollar in its budget, and thus manages to spend less than 1 cent of every dollar it pays for actual healthcare delivery on billing and administration. In marked contrast, the average health insurance company — Brill uses the example of Aetna — easily spends 30 cents of every dollar just to process claims and pay its management. And that’s just the payer side.

Paperwork or Patient Care?

On my side, the provider side, every hour I spend trying to document what I do for my patients means one less hour I can spend actually doing it. And that does not include the hours my administrative colleagues spend, dotting all our i’s and crossing our t’s, so that my employer can satisfy the dozens of different requirements mandated by all the different insurers our patients use, and all their several insurance plans, each with its own set of rules, so that, ultimately, we can get paid to do what we do.

A book published a few years ago by the National Institutes of Health, called The Healthcare Imperative: Lowering Costs and Improving Outcomes, describes this insanity in detail. Studies conducted about ten years ago found that administrative costs for delivering care in U.S. hospitals comprised about 27% of their total revenue. For physician practices, the percentage was 24%. The authors describe three main factors contributing to this, dubbed complexity, variation, and friction. From the book:

The first is complexity. The insurance process has multiple steps, often demanding precise accuracy and attention to detail. BIR steps [or the activity involved in billing insurance companies] include contracting with insurers and subcontracted providers; maintaining benefits databases; determining patient insurance and cost sharing; collecting copayments, formulary, and prior authorization; coding of services delivered; checking and submitting claims; receiving and depositing payments; appealing denials and underpayments; collecting from patients; negotiating end-of-year resolution of unsettled claims; and paying subcontracted providers.

The second burdensome feature of managing insurance is variation. Due to consolidation of insurers in recent decades, a provider practice likely has fewer payers to deal with. However, each payer offers multiple products and often further customizes products to individual purchasers (such as a large employer). Each provider may have to deal with dozens to hundreds of different plans. Providers must track plan-specific benefits and reimbursement rules, maintain special databases and benefit experts, and conduct time-consuming checks of plan details prospectively and in response to claims denials. This situation is in stark contrast to privately administered plans in other developed countries, where there is typically a single primary benefits package.

The third feature is friction. Many BIR steps slow and complicate the process of getting paid. These include priority authorizations and formulary restrictions, high rates of nonpayment for initial submissions (10 to 15 percent), underpayments, and ultimate non- and underpayment (5 to 10 percent) (Gans, 2009). Providers express frustration and occasionally a suspicion that the process is kept complicated to lower ultimate payment levels.

Yup. Couldn’t have said it better myself. One of the things that was potentially supposed to help fix all this was the advent of electronic medical records. However, now that we have them, I can say, from both of the camps I occupy, that computerized health documentation is very far from living up to its vaunted potential for providing genuine efficiency or cost savings to patients and providers. A study published in Risk Management and Healthcare Policy outlines some of these potential benefits and real drawbacks. One of the obvious problems I see every day is that most of the myriad software systems in place are unable to ‘talk’ to one another. Despite the hours I spend every week typing patient notes in my laptop, I still have to fill out mountains of paper forms, write and send faxes, and make myriad phone calls to find out what I need to know. Last week, just obtaining a copy of the pathology report from my recent colonoscopy required me to make several phone calls, then physically drive to the hospital, and find my way through a labyrinth of corriders to sign a form that would allow a clerk to look up my record and print it out.

By all means, let’s keep the pressure on the makers of overpriced diagnostic equipment and drugs, hospitals that charge us five bucks for every 5-cent bandaid, and specialists who charge thousands to perform one procedure, to suck it up and cut their charges. But for heaven’s sake, it seems to me we should look at how much time all of us who deliver healthcare spend NOT delivering healthcare. And why. And how much it’s costing us all.

Further reading:
What if you ‘shopped’ for the best price on a hospital procedure?
Is Single-Payer Healthcare Inevitable?

Not Exactly Hearts and Flowers

Among cancer tests, colonoscopies are a little odd. I’m not talking about the infamous prep, or even the general indignity involved. I’m talking about the results.

If the doctor finds nothing — no polyps, no ulcers, no funny stuff — then, great. You’re in the clear, come back in ten years, see ya later, have a nice life. If the doc finds polyps, which is often the case, he or she will usually try to remove them completely during the colonoscopy. The ones shaped like little pendulums usually get lassoed by a kind of wire snare that cuts them out, stem and all. The flat ones get excised. If they are larger than usual, with a broad attachment area, they may only be biopsied, and may have to be removed by surgery later. In any case, all these bits of tissue get sent to our friend the pathologist, who analyzes them and pronounces them benign. Or not.

The good thing about all this is that, if the doctor does a good job of removing all the polyps so that they have the ever-popular ‘clear margins,’ then even if they turn out to be cancerous, the treatment — removal — is already done. So, you can freak out a little, or maybe a lot, (YIKES!) and then recover (WHEW!), and then attempt to move on to resigned acceptance, because you’ll probably have to have another colonoscopy in a year or three to make sure they don’t come back. The bad thing is, of course, that you’ve just been told you have Another Stalker.

No NED

And that’s the weird part. Once you have a malignant polyp removed, you don’t get to hear that magic phrase No Evidence of Disease. You may — with the assurance of your doc and the pathologist that the entire rat bastard was removed with clear margins — assume for the time being that you are now free of disease. But that’s hardly the same thing. And I doubt if anyone in their right mind would willingly have another colonoscopy a week later just so the doc could officially pronounce their colon as being in that blissful state of NED. At least I wouldn’t. Besides which, my insurance wouldn’t pay for it.

This was my experience a year ago. One of the treacherous little bastards removed last year was found to contain cancer cells, and, for the science geeks, was characterized as “tubular adenoma with high-grade dysplasia.” This characterization doesn’t automatically include cancer cells, but mine did. When I saw the doc himself later last year, he told me in no uncertain terms that I’d had non-invasive, in-situ, Stage 0 colon cancer. Great.

The thing is, though, that the other six polyps were not adenomatous, i.e., the kind we worry about, but merely hyperplastic, the kind we don’t worry about. And generally speaking, colon polyps are slow-growing little buggers. So, I had a reasonable expectation that my next colonoscopy would find none of the little buggers.

No Valentine

So, two days ago, I had my one-year follow-up scope. When I arrived, I got hugged by all my nurse friends in Endoscopy/Day Surgery. I was to be knocked out completely this time by the nice anaesthesiologist who came in to introduce himself beforehand. My GI dude also came in to assure me that he would come and talk to me afterward to tell me if he found anything. After I was wheeled in, IV’d, and hooked up to the appropriate monitors — and found yet another old nurse buddy in the OR who was assisting — I laid there watching the IV tube. As the knockout juice began flowing down the tube, I said cheerfully, “Night, night, everyone! Wake me up when it’s over!” And the best part was that I did wake up when it was over, rather than during, which is what happened last year, an event I do NOT recommend.

This year, along with the usual toast, graham crackers, juice, tea and coffee on the post-procedure menu, the recovery nurse offered oatmeal. Wow! Oatmeal! With milk and sugar! And it was pretty good, too, although probably sawdust would have been fantastic after not having eaten solid food for a day and a half. Then she helped me sit up, took my blood pressure again, and showed me a little diagram drawn by my GI dude. A diagram? Uh-oh…

A little later, my doc confirmed what I already knew, that yes, there was a new crop of polyps. There were more of them than last year, but they were smaller. There was also a teeny ulcer that he thought probably just arose from my having to do two days of prep. But he did biopsy it. He removed the eleven or so new polyps. As usual, they were being sent to the pathologist. As usual, he couldn’t really say from just looking whether they might or might not be malignant. The fact that they were there at all was depressing, and I told him so. I was really hoping for nothing. NED. No Evidence of Disease. “This is not the Valentine I wanted from you,” I said. “How long until the path report is done?”

“Give it a week,” he said. “I’ll call you as soon as I know. I got them all, though, so they’re gone.”

Gone but not Forgotten

So, now, I wait. You all know how much fun that is. I tell myself that ‘gone’ is good. Gone means that, no matter what the traitorous little rat bastards turn out to be, I’m done with them. So, I’m okay, right?

No. I’m not okay. I wanted NED. But I didn’t get him. Now, if I’m really honest with myself, what I want is to cry. I was just starting to feel like I was gluing myself and my life back together after my original Stalker. I don’t want to have to be vigilant about another one. I’m really tired of vigilance.

Welcome to Never Normal. Welcome to this brief, I hope, Pity Party. Welcome to Cancerland. I promise to be more cheerful later. Just not today.